Detection of Mycotoxins in Patients with CFS

True, but Brewer's patients in his first paper do meet the criteria for CFS and Brewer is now using this method to treat CFS patients.

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Therefore, I assume that he will be out with data showing how his treatment helps CFS patients.
Nevertheless, I'm confused as to why, if mycotoxins produce the symptoms shown above and they are different than CFS symptoms, that CFS would have different symptoms if CFS is caused by mycotoxins? Is it that CFS has some specific mycotoxin profile that is unique?

Therefore, I assume that he will be out with data showing how his treatment helps CFS patients.
Nevertheless, I'm confused as to why, if mycotoxins produce the symptoms shown above and they are different than CFS symptoms, that CFS would have different symptoms if CFS is caused by mycotoxins? Is it that CFS has some specific mycotoxin profile that is unique?

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His patients in the study were long-term ME/CFS patients. I'm not sure where you read that their symptoms are different. Perhaps you could list these 'different' symptoms?

I'm also not sure if the specific myco profile is unique. But both his and Dr. Grant's patients are improving on the protocol, and I'll take any improvement over the steady decline I've experienced over the last 4 years.

Here's a quote from his April 2013 study:

"Patients (n = 112) with a prior diagnosis of CFS were evaluated for mold exposure and the presence of mycotoxins in their urine. Urine was tested for aflatoxins (AT), ochratoxin A (OTA) and macrocyclic trichothecenes (MT) using Enzyme Linked Immunosorbent Assays (ELISA). Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection."

Any ideas if a prescription for ampho b as a nasal lavage is easy to come by o course given a doctor's prescription? I've never heard of this. I have heard of nasal sprays.

I found this and wish Dr. Grant would publish something more specific like this:

Most recently, the presence of an inflammatory response (as evidenced by an intense eosinophilic infiltration into the nose and sinus mucus membrane) to fungi, which normally colonize the nose and sinuses leading to chronic sinusitis (or chronic rhinosinusitis [CRS]) has been postulated by the Mayo Clinic (Ponikau, 2002, 2003).

In theory, diminution of this allergic response should lead to cessation of infected mucous drainage and/or other inflammatory reactions to the fungi. Recommended treatment now consists of a three-month or greater trial of amphotericin B nasal lavage twice daily or voriconazole nose spray once a day.

This therapy is often supplemented by nasal lavage with Wilson’s solution (gentamycin in saline) twice daily, followed by the application of one of the above antifungal agents. If after three months the patient is positively responding to the protocol, antifungal treatment is continued indefinitely to diminish re-colonization of the nose with fungi. Wilson’s solution is selectively discontinued after six months.

Types of Nasal Rinses
posted on January 12, 2011
The process of actually rinsing out the nasal and sinus passages is probably more important that what you rinse with. The following options are available.

Antibacterial irrigations
Wilson’s solution, a combination of Gentamycin or Tobramycin and normal saline solution, is the classic antibiotic irrigation. 160mg Gentamycin in 1 L of NS is the standard solution. Bactroban ointment is a water soluble substance, which can be readily dissolved in saline. Typically we use 22 grams of 2% ointment in one liter of normal saline (1 1/2 to 2 inches of ointment in a neilmed rinse kit) and have patients irrigate for four to six weeks as needed. Any ear drop or eye drop is safe to use, and we often use them perioperatively. However, they cost-prohibitive.

Antifungal irrigations
The Mayo Clinic has popularized using Amphotericin B 100-250 micrograms/ml of sterile wateras an irrigation solution. The stability and efficacy have been questioned, but it seems promising. A reasonable option would be to place 2 50 mg IV vials of Ampho B in 1 liter of distilled water and irrigate each nostril with 20 cc of solution twice a day. Itraconazole (Sporanox), Lamisil, or Diflucan can also be made into a nasal rinse. The Amphotericin nasal rinse needs to be refrigerated, is in sterile water, and has been reported to be difficult to tolerate by many patients. Lamisil and Sporanox are both very expensive.

Getting a sinus fungal culture is difficult to do and highly inaccurate. A mycotoxin test from Realtime Laboratories will tell you whether you are excreting mycotoxins. A positive test will indicate either that you are currently exposed to environmental molds or you have a current internal mold colonization or both.

Brewer has spent almost 2 years working on treatment. He started with oral medications with limited success. For the past 10 months or so he has tried a number of nasal treatments and has now settled on a rather simple protocol:

I don't know precise doses, but the people at ASL Pharmacy are very easy to work with. Some people cannot tolerate the Amphotericin B. It is important that is be dosed separately as it can bind with other atomized medications.

It should be noted that sinus structure can be a limiting factor as it can prevent penetration of the medications deep into the sinuses.

Some people have a herxheimer reaction and so the Amphotericin B treatement is limited to once per day. ASL and Brewer are working on other types of antifungal that might be as good or better and easier to tolerate.

The lack of more published data is understandably frustrating, but you have to remember that Grant and Brewer are practicing physicians. They are trying to help hundreds of chronically ill patients while trying to let others know what they are learning while they are learning it. One good thing about the progress they are making is that other practitioners who are willing can easily adopt these testing and treating methods.

I asked Dr. Brewer about nasal colloidal silver. He said that he thought that colloidal silver was a promising treatment.

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Dr. Brewer presented his treatment strategy for getting at the mold and getting rid of it. The first step is to reduce input. The second step is to enhance output. This can be through improving glutathione, increasing sweating, using binders like Cholestyramine or activated charcoal (his particular favorite) - and developing an antifungal strategy.

Getting a sinus fungal culture is difficult to do and highly inaccurate. A mycotoxin test from Realtime Laboratories will tell you whether you are excreting mycotoxins. A positive test will indicate either that you are currently exposed to environmental molds or you have a current internal mold colonization or both.

Brewer has spent almost 2 years working on treatment. He started with oral medications with limited success. For the past 10 months or so he has tried a number of nasal treatments and has now settled on a rather simple protocol:

I don't know precise doses, but the people at ASL Pharmacy are very easy to work with. Some people cannot tolerate the Amphotericin B. It is important that is be dosed separately as it can bind with other atomized medications.

It should be noted that sinus structure can be a limiting factor as it can prevent penetration of the medications deep into the sinuses.

Some people have a herxheimer reaction and so the Amphotericin B treatement is limited to once per day. ASL and Brewer are working on other types of antifungal that might be as good or better and easier to tolerate.

Click to expand...

I asked Dr. Brewer about nasal colloidal silver. He said that he thought that colloidal silver was a promising treatment.

I asked Dr. Brewer about nasal colloidal silver. He said that he thought that colloidal silver was a promising treatment.

soulfeast,
Both medications are delivered with an atomizer provided by ASL called the NasaTouch. It takes five minutes. Brewer didn't mention colloidal silver to me. I don't think he currently considers that a good option. It appears his thinking on input/ouput has changed. Output is not an issue at all. Only input is the issue. If you can stop the input the output will take care of itself. I asked about charcoal, etc. He does not recommend this at all. Again, a major deviation from Shoemaker.

I should mention that what ASL is doing is a major advancement that is fairly recent. The medications come in individualy dosed ampules. You pop the top, put the liquid in the device and deliver the medication.
I read some papers on delivery of medications to the sinuses. It is much more complicated than putting some drugs in solution. Preparation, particle size, delivery system etc are all critical. A study I heard about showed that most products like Nasacourt basically blew in and down the throat, and wasn't delivered where it is suppose to be, although they may have improved this recently.

I'm curious -- what is Dr. Brewer's take when it comes to environmental 'input'? Does he tell patients to move out if they currently have mold in their apt/house -- especially stachy? I'm guessing the answer is yes?

Or does he recommend remediation/cleaning?

If one's current dwelling is 'clean', but has past exposure, does he recommend getting rid of past possessions that may have been contaminated? Or some sort of testing of those possessions?

I would like to know Brewer's involvement with Realtime and the mycotoxin test. The Realtime test is propreitary and expensive. Are we certain there is no relationship of any kind that is in any way remunerative?

I would like to know Brewer's involvement with Realtime and the mycotoxin test. The Realtime test is propreitary and expensive. Are we certain there is no relationship of any kind that is in any way remunerative?

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Yes, we can. Researchers have to disclose these things in studies, and in this latest one it says:"Joseph Brewer declares no conflict of interest."

Also, several other labs (like American Medical Laboratories) offer basically the same test. Same price as well.

Therefore, I assume that he will be out with data showing how his treatment helps CFS patients.
Nevertheless, I'm confused as to why, if mycotoxins produce the symptoms shown above and they are different than CFS symptoms, that CFS would have different symptoms if CFS is caused by mycotoxins? Is it that CFS has some specific mycotoxin profile that is unique?

Click to expand...

I wouldn't assume that. Do you know how time consuming/expensive it is to produce data and studies ?
I sure will appreciate any data he produces.

Remember.we all have genetic weaknesses and that may partially explain why we're all affected differently. I have heard of families in mold affected homes, all affected, yet expressing it in different way.

I don't know if a script is required or not, but Healthy Choices in Chappaqua, New york prepares it. I did see Dr Grant and she called in a request for it to be prepared for me. But that doesn't mean you need a doc - might be worth it to ask them. $85 for one month supply.

I just want to note this potentially very important fact I learned from Dr Grant and that is that she said amph B is the only known medication that breaks down the hyphae and that is why the other antifungals don't work. I do hope Brewer knows this while he considers other more tolerable antifungals. If what Dr Grant says is true, they may just not work.

Getting a sinus fungal culture is difficult to do and highly inaccurate. A mycotoxin test from Realtime Laboratories will tell you whether you are excreting mycotoxins. A positive test will indicate either that you are currently exposed to environmental molds or you have a current internal mold colonization or both.

Brewer has spent almost 2 years working on treatment. He started with oral medications with limited success. For the past 10 months or so he has tried a number of nasal treatments and has now settled on a rather simple protocol:

I don't know precise doses, but the people at ASL Pharmacy are very easy to work with. Some people cannot tolerate the Amphotericin B. It is important that is be dosed separately as it can bind with other atomized medications.

It should be noted that sinus structure can be a limiting factor as it can prevent penetration of the medications deep into the sinuses.

Some people have a herxheimer reaction and so the Amphotericin B treatement is limited to once per day. ASL and Brewer are working on other types of antifungal that might be as good or better and easier to tolerate.

dannybex,
Brewer thinks it is very important to remediate any mold issues in the house. He has not emphasised with me any need to get rid of stuff. Unfortunately this is a very complex question. I consulted with a variety of experts on this. Ultimately I decided not to throw my stuff out. I found several people on the internet that got rid of every posession that they owned yet they were no better months later. I needed some solid evidence that this made a difference and couldn't find any. I didn't want to end up both sick and without posessions. This is how alot of people ended up.
Remember that mold spores, spore fragments, mycotoxins etc don't just hang around forever. They will break down biologically over time. To exist continually there would have to be continuous production.
So if stuff clearly is making you sick then, yes, get rid of it. But the emphasis really needs to be on mold that is alive and growing, in my opinion. I think the ERMI test is the best place to start.
Brewer has never mentioned a low mycotoxin diet. Remember in his original study the control group were all negative for mycotoxins. This meant they all fell below a certain level. But some did have trace levels. So I suppose this could have come from food or maybe just outdoor air. Like anything else I suppose a small amount won't hurt you.

boohealth
Realtime Labs was doing the mycotoxin tests for a while before Brewer knew about it. I have known Brewer as my doctor for 17 years. If he indicated no conflict of interest I am confident this is true. Brewer is not a "mold doctor" trying to prove he is right. He was a CFS doctor when I met him 17 years ago and he still is. He discovered his CFS patients uniformly test positive for mycotoxins and is going down this path to try to help his patients.

katkoff,
There are three mycotoxins that can be tested for. There are other mycotoxins, VOC's etc that cannot be tested for. There is no real pattern that I know of. Some have one, some two, some three.